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Thank you so much. I don’t have more experience than you, for starters. I’m in an awful struggle here and, while I’ve had my share of suffering for awhile now, was only diagnosed with EDS about a year ago.
Fibromyalgia, along with the explanation that there was a likelihood that it could (over time) progress to RSD was reviewed with me nearly 10 years ago by a highly decorated, award winning, Harvard and Vanderbilt doctor with numerous degrees and licenses in multiple states. This was during an acute injury/dislocation which required an obscene amount of EVERYTHING IMAGINABLE being invested into its rather extreme surgical repair and post-op dedication.
Back in those days, my insanely strong will coupled with my identity as a vibrant and healthy person made me immediately deflect and refuse the notion. I simply took a ‘no thank you’ approach and said that I’d be fine. I wanted to have a successful surgery and ‘just move on’. It had been such an impossible rare and all-invasive injury/dislocation that I’d already been traumatized and isolated enough. I’d done all that I could, my conscience was clear, I’d gone to the best and promptly taken care of my issue. What more…. I’d done EVERYTHING in the best way possible and I KNEW THAT I HAD!
In hindsight, no matter how determined I had remained over these past many years to deflect the snowballing health problems I endure, everything had begun to take its toll on me. I’m enduring these diagnoses and their illogical multitudes of dreadful symptoms. It’s like a little baby lamb fighting a ferocious and insidious wolf. My waif-like and acutely weakened, frame under perpetual attack by such wicked symptoms, is certainly no worthy adversary for such cunning physiological dysfunction.
Ta-da.org . I just ran across that site. I’m beginning to wonder if TX might be my closest option for appropriate medical care. Five hours. Daunting when an hour can be too much. Dr. Grubb is in Ohio and would be 12 hours. I’m even desperate enough to offer myself for what I used to think was experimentation that was only submitted to by whinos and druggies (and I even thought that should be illegal). I’m speaking of the human research. It would, more than likely, far surpass the care that I am receiving and probably be well worth it. My quality of care has turned by 180 degrees due to having to move. I could’ve never been prepared for the tremendous disparity of quality of medical care within the United States. It’s shocking to say the very least, very sad. I was aware of differing valuation of humanity by various cultures, however, never could have known that it would exist to this extent within the US. Pretty painful, to say the least.
My goal is ‘first, do no harm’ for the doctors and then I, personally, just want more function. I think that, since I seem to have a high tolerance for pain, a can handle some pain if I can only have some function restored. The nausea, diarrhea, vomiting, sweating, etc is also capable of a ‘shut down’ for me though. Exhaustion is staggering (literally, at times). I thought that was occurring as a possible result of my body’s reaction to pain. I’ve had 3 kids and none with any anesthesia – I know pain and am strong willed enough to handle it. Now, the long term nature of my pain by this time is probably another story. Narcotics make me sick as a dog and I fear they would cost me more function so I’ve used alternatives such as Lyrica. Sorta ‘chicken or the egg’ and not sure how to organize, set goals and accomplish maintenance – especially being so physicially defective and having virtually no medical assistance.
I have ‘windows’ where I am functional enough to be able to research and advocate for myself a little. Consistency and efficacy eludes me though.
My genetic doctor was explaining to me that he would prioritize the networking of specialists within his medical system to cope with the global effects of connective tissue disorder. Maybe I should ‘lean’ on him and his office harder. It’s just that I NEED the help NOW! I don’t want to wait, however long, for attempts to orchestrate a network of doctors who ‘get it’ and will be working harmoniously to provide care.
Truthfully, even if there were ONE single comprehensive health building or medical center to house EDS/Marfans/connective tissue disorder specialists – that would be a HUGE VICTORY!!! I don’t feel good enough AND my body simply will not cooperate with my will. The struggle for proper treatment is relatively futile. If anyone needs one stop shopping, it’s us! Heck, put all of the EXPERTS in one building; genetic, orthopedic, cardiologist, endocrinologist, neurologist, rheumatologist, opthamologist, pain management, etc etc etc. Probably a warm weather state would be a good idea to prevent infringement of inclement weather. I wouldn’t be surprised if they didn’t draw from all over the country. Don’t forbid non-connective tissue disorder patients either just make sure the specialists have a thorough understanding connective tissue disorder. Add a research and development department. That would really be ‘the be all end all’! The patient would just have to get a hotel room for a week. Then struggle to find local care once back home BUT with renowned expert information in hand, at least the local GP couldn’t call us a liar. We could also gather recommendations for treatment plan. Return annually or biannually for follow up and treatment plan adjustments, as needed. I mean, they do have specialty facilities for cancer and the like….
I am unaware of a more all-consuming health crisis than the conglomeration of what we’re going though – multisystemic devastation. Of course, I don’t have the energy to do the research to confirm that. I’m just pretty blown away by what I experience.
I’m tired and thinking out loud. Yes, help me if you can. I would welcome any suggestions with open arms.